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University of Wollongong Thesis Collections University of Wollongong Thesis Collection University of Wollongong Year 1995 A study into the use of and need for healthcare services, for HIV infected people, from diagnosis until death Margaret I. Jamieson University of Wollongong Jamieson, Margaret I., A study into the use of and need for healthcare services, for HIV infected people, from diagnosis until death, Doctor of Philosophy thesis, Department of Public Health and Nutrition, University of Wollongong, 1995. http://ro.uow.edu.au/theses/1701 This paper is posted at Research Online. A study into the use of and need for healthcare services, for HIV infected people, from diagnosis until death. A thesis presented in partial fulfillment of the requirements for the degree of Doctor of Philosophy. from University of Wollongong by Margaret I. Jamieson. BA(Glas.C.T) MPH (Dundee). Department of Public Health and Nutrition. 1995. 11 I hereby declare that I am the sole author of this thesis. This thesis does not incorporate without ackowledgement any material previously pubUshed or written by another person except where due reference is made in the text. Margaret I Jamieson. Ill ABSTRACT The aim of this study was to determine the use of the healthcare system by people with HIV /AIDS, and to identify and compare variations in service provision to patients with similar needs, and variations between needs and service provision. The variations would suggest changes in service management in the interests of improvements in cost /effectiveness. Central to health service management is the need for information. The primary hypothesis of this study is that information systems need to be refined to support management of AIDS/HIV as a chronic, infectious condition, from initial manifestation through to death. It is hypothesized that it is impractical to manage healthcare deUvery without recognition of the disease processes and changes in social factors over the duration of the disease; or without taking account of the hnks between episodes of care, and the extent of care management and access. This was a longitudinal study, which involved two hundred and ninety—two HIV infected respondents. Respondents entered the study through networking, all volunteered. The study duration was from March 1993 until March 1994. In addition to these recipients of care, interviews were undertaken with service providers. This information was used to corroborate the findings of those persons who were HIV infected. Although limited by issues such as volunteer bias, small numbers and an inability to access clinical records, the study produced much useful information. It was possible to ascertain health service utilization for a group of individuals who exhibited a wide range of symptoms. The study also demonstrated the difficulties of accessing a heavily researched group and in maintaining contact over a long period of time. The patient population was highly mobile IV in seeking and accessing healthcare. This mobility is reflective of the problems of confidentiality, unmet need within an area and patient choice. The main findings of the study demonstrated that people sought healthcare from a wide variety of sources. There was considerable use of voluntary and statutory services. Service utilization was influenced by specific demographic features such as living alone, being a professional and using a private physician and/or general practitioner as their main source of care. A series of ten levels of HIV infection, from diagnosis through to death, were identified. The levels indicate increasing disease severity and increasing healthcare needs. One trend from this study suggests that the bulk of care is happening in the community with a heavy involvement of voluntary carers. The involvement of a significant number of agencies in the delivery of care impacts upon costs and co­ ordination of care. There are substantial costs involved including personal costs that were beyond the scope of this study to evaluate. Whilst the use of Diagnosis Related Groups is applicable to the estimation of hospital costs, given the trend towards community care, it is important to develop a series of cost measures that incorporate community as well as hospital costs. The findings of the study suggest that there is an urgent need to develop a stmctured approach to co-ordination of care. A development of a series of cost measures that incorporate community and hospital cost is required. Whilst there is no such thing as a typical patient, it is possible to identify a series of phases of HIV infection with levels of severity. Each stage indicates a differing need for and use of healthcare services. The importance of collecting demographic data was reinforced. It was possible to show that for this group of HIV infected people, certain factors, were implicated in the frequency and use of healthcare services. The need for additional services was brought to the fore, particularly services relating to specialized home care and community psychiatric support Acknowledgments. First and foremost, I wish to acknowledge with gratitude, the assistance of Professor Don Hindle, who supervised and encouraged me in my endeavors. Secondly, Dr Lindsey Harrison deserves special mention, her keen supervision in the later stages of this project, encouragement, unwavering support and guidance were without equal. Professor R Harris deserves a mention for his patient guidance and asssistance with the final stages of this thesis. To the participants who volunteered in this study goes my deep gratitude and thanks. I hope I have clearly and fairly represented their views in this thesis. I especially thank Bob—whizzing around Sydney on his Harley Davidson was one of the tmly memorable moments of my time in Australia.(I'm still of the opinion that I could have driven it!). To Gillian Spooner for her patience in allowing me access to the whizz-bang technology and her patience with my ineptitude. On both sides of the world, I have received a great deal of personal support from friends and family, without whom, this thesis would not have been completed. In particular, I would hke to acknowledge the friendship and help of: Ty Francis, Barbara Pyne (for endless coffees, chats and sound support), Barbara Meyer (for reassurance that everyone goes through these phases!) Atmn, Sylvia and Ingrid for just being them!! Lesley for letters from Minsk—there is another Hfe out there and finally, Mil for love, support and letting me be a kept woman and my folks for always being there for me. I hope the writing of this thesis has not strained the boundaries of family and friendship ties too much. VI To all who have been party to this thesis, directiy or indirectly, goes my sincere thanks. Their contributions to this piece of work are acknowledged, while any mistakes lying herein must remain my own. This thesis was completed with the funding assistance of a University of Wollongong Post-Graduate Award (April 1994-1995). Vll Table of Contents Title page i Statement of Authorship i i Abstract iii Acknowledgements v Table of Contents vii List of Tables x List of Figures xii Chapter 1 Introduction 1 1.2 Origins of the research 4 1.3 Study Objectives 6 1.4 Formal statement of the research hypotheses 7 1.5 Thesis Stmcture 8 Chapter 2 The Nature of AIDS / HIV Infection. Overview 11 2.1 The Nature of AIDS / HIV Infection 14 2.2 Transmission of the Virus 17 2.3 Disease Progression 24 Vlll 2.3 Global Patterns of the HIV Epidemic 26 2.4 Infection in Australia 28 2.5 Clinical Management 32 2.5.1 The Range of HIV Infection 32 2.5.2.Management of HIV Infection 37 2.6 Case Management 40 2.7 Conclusion 45 Chapter 3 Social perceptions of AIDS and the subsequent impact on policy development. Overview 47 3.1 The Perceptions of AIDS and the resultant impact on Health Services 50 3.2 The Plague of the Twentieth Century ? 52 3.3 AIDS as a Chronic Disease 60 3.4 AIDS as aChronic Infectious Pandemic 64 3.5 Response of the Health-care Services 67 3 6 Current Service Responses in AustraUa 72 3.7 Australian Federal Response to AIDS/HFV 74 3.8 Health Service Response in New South Wales 77 3.9 Conclusion 80 Chapter 4 Health Service Access, Use and Costs. Overview 82 4.1 Access to services 85 4.2 UtiUsation of Health Care Services 92 4.3 The Costs of AIDS/HIV 98 4.3.2 Case-mix and Diagnosis Related Groups 99 4.3.3 Costing Studies 104 4.4 The Impact on the HIV Infected Individual 109 IX 4.5 Conclusion 112 Chapter 5 Method Overview 114 5.1 Design Issues 117 5.1.1 The measurement of need, cost and the utilisation of healthcare as a basis for service planning 117 5.1.2 Research context 119 5.13. Research Participation 120 5.1 4.Data Capture 124 5.1.5 Confidentiality 131 5.5 Study Method 136 5.3.1 The recipients of healthcare-People with HIV/AIDS 137 5.3.2 Health Care Providers 138 5.4 The data collection instruments and their constraction 139 5.4.1 The CUent Questionnaire 139 5.4.2 The Interview Schedule 142 5.5 Method of analysis 143 5.6 Conclusion 145 Chapter 6 The Pilot Study Overview 147 6 1 Study Design 149 6.2 The Interviews of Service Providers 149 6.2 (a) Data Collection: the Interview Schedule 149 6.2 (b) The Sample 150 6.2 (c)Metiiod of data capture 150 6.3 Data Analysis of the Interviews 150 6.4 Interview Findings 151 6.5 Self -Enumeration Questionnaire for ADDS/HIV Patients 163 6.6 Results 165 6.6.2 Clinical Characteristics of the Sample 169 6.6.2(a) The Results from the Mental Health Questionnaire 169 6.7 Discussion 188 6.8 Conclusion 193 Chapter 7:Results Overview 194 Part l:The Interviews of Service Providers 197 7:2 (a) The interview schedule:data collection 197 7:2(b) The Sample 197 7:2 (c)Method of data capture 198 7:3 Data Analysis of the Interviews 199 7:4 Interview Findings 200 7 Part 2:The results of the self-enumeration questionnaire 221 Chapter 8:Discussion and Conclusions 8.1 Discussion of the results of the study 252 8.2 Limitations of Study 266 8.3 Areas for future research 272 8.4 Conclusions 273 References 277 Appendices.

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